Here’s Anna’s Riley story:
When asked to write a biography for a 12 year old, it is amazing to think a 12 year old has had enough happen to her to need a biography. However, when living with a chronic illness most of your life, a lot does happen. When Anna was 20 months old, she started walking a little differently than normal. At first, I, her mom, thought I was imaging it all and just being an anxious parent. Over the next several weeks, however, I realized something was dramatically wrong and unfortunately, it wasn’t my imagination.
At first, Anna’s only symptom was walking a little “wobbly,” but over the next few weeks she began to limp, especially after waking in the morning or from a nap. She never really complained, but Anna rarely complained about anything. She was a cooperative baby, always smiling and curious about the world. When she started to not be able to bear weight and refused to walk in the morning, it was then obvious something was wrong. At this point, she was crying and wanting to be held all the time…not at all like our Anna. Then, after about hour, she would start walking with a limp, and be back to herself. At this point, we went to her pediatrician.
At her first visit, Anna, of course, was her resilient self, not really showing any symptoms at all. Her knee was a little swollen upon examination, but she was crawling and running. When I discussed her symptoms with the pediatrician, juvenile arthritis was mentioned as a possible explanation. As a parent, this was devastating, as I immediately imagined the worst. Since her symptoms had only begun, we had to wait for the results of her labs as well as watch her symptoms. When we received the test results, everything looked normal, which was encouraging, but it was obvious that her symptoms were not resolving. Instead, Anna got worse. Since her lab results were normal, her pediatrician thought Anna’s symptoms were as a result of an injury and would resolve. As a parent, I knew that I had to be Anna’s voice and advocate. I made another appointment and several days later, her laboratory results confirmed that she had an autoimmune disease—juvenile arthritis.
Living in Iowa at the time, Anna was referred to Dr. Polly Ferguson at the University of Iowa, a two hour drive from our home. At her first appointment, we realized that Anna’s disease was worse than we knew. She had disease involvement in both of her knees and ankles instead of just one knee. She already was experiencing limited range of motion in both of her knees. As a result, she had to wear splints on both legs at night. In addition, she began to take daily medications, which she didn’t like because of the taste. However, Anna didn’t let this deter her. If you could see her at that time, you would never suspect anything was wrong. She didn’t let anything stop her…she acted as any toddler would. She climbed, ran, and jumped. She even figured out how to walk while wearing her splints.
Initially, Anna tried several medications to control the arthritis. Unfortunately, long term use of these medications required regular blood draws to get her laboratory values. This, I believe, was the most difficult part for Anna. She could deal with the daily pain from the arthritis because she was use to it. Blood draws were frightening to her. After the second time she had her blood drawn, she knew what was going to happen. She would try to hide under a chair in the waiting room thinking that I would not be able to find her and she could avoid having her blood drawn. Over the years, her anxiety of going to the lab has decreased, in part, because of the anesthetic cream we use, and also her knowledge of her disease has increased. In the beginning, it was difficult for a two year old to understand. Now, ask Anna, and she can tell you anything you want to know about arthritis.
When we moved to Indiana, we were worried about Anna’s care. With the change of jobs came the change in insurance. Would they cover Anna? We had to make arrangements in our coverage to make sure there were no gaps in health insurance so that she was covered. In addition, we had to change doctors. Luckily, we had Riley Hospital in Indiana. We found Dr. Bowyer through our physician at the University of Iowa. Once we met Dr. Bowyer, I knew we were good hands. Anna loves Dr. Bowyer and her staff, and considers going to the doctor a treat. Although Anna eventually developed arthritis in her wrists and finger, she is now doing quite well. In the last couple years, she started swimming on a club team, which has made a huge difference in her physical functioning and confidence. Anna is now 10 years old. Thanks to her doctors, nurses, physical therapists, and medications, most people would never guess that she has arthritis.
Over the years, Anna has faced many challenges. She has had side effects from her medications, including nose bleeds and elevated labs. She has to explain to peers and adults that yes, kids do get arthritis too and she is not making it up. She has had difficulties in dressing herself (buttons are particularly hard), opening doors, and pushing the button on the water fountain. It sometimes takes her a little longer to physically accomplish things. However, she also has had many blessings, including her physicians and their staff, teachers at Battle Ground Elementary, and many friends. The biggest blessing is Anna herself. Anna loves life and approaches each day with joy. She has not let arthritis stop her from doing what she wants. Instead, it has become a part of her because she does not remember a time when she did not have this disease.
Recent update… Anna isn’t swimming too much anymore, but she’s gotten into theater and doing character speeches. Anna favorite candies are Kit Kats and Sour Patch Kids. She is still doing quite well with her disease and seems to be a confident,